Very confused

[Tlock60]

Hi,

My name is Terry and my husband is the one with the problem. He was told 6 months ago that his aortic valve was not doing so well and he will need surgey to fix it. Now he is only 40 yrs old and was born with this problem. Don't know exactly how to put it.All this medical talk is just hard to understand. Now 6 months later they did another echo and it went from 0.8 to 0.67. He has been showing all the symptoms with chest pain to where he can't breath. He builds houses for a living and use to be so active in church softball ,bowling and could work from sun up to sun down. Now he just gets so tired and takes alot of naps. we were having trouble with doctors because we don't have insurance. But we have had to resort to going to social service to get help. But all pride to the side I just want him to be able to go back and live a normal life without this hanging over his head. I am so afraid that if that they wait to long something bad will happen. I heard or read somewhere that if your in pretty good shape and pretty good health that the surgey would be easier to recover from. Got any good advice for me.

Worried wife,
Terry

 

[JimL]

Hi Terry, and welcome. Everybody here has been through the same things, is going through them, or is closely associated with someone going through them.

Your husband's symptoms sound very similar to what I experienced a couple years ago. I could no longer go from sunup to sundown. Everything was uphill. Breathing was becoming more and more difficult. Sleeping was becoming impossible, because I couldn't breathe laying down.

All symptoms disappeared after surgery. You want to talk to the cardiologist, and talk to the surgeon. You're quite right that damage can be done to the heart if you wait too long to do the surgery. He should recover just fine.

There are a lot of terms to learn; most of them have been discussed on various threads before.

 

[tommy]

Terry,

Welcome to our forum.

I know that this is scary stuff. I wish that I could help you with some financial advice. Perhaps others will come along and help. Hang in there.

All of this information and emotion hits you all at once. It can seem overwhelming at times. Your feelings are normal. You are not alone.

Let me boil down a couple of key things for you.

1. There is no question that it is best to have the valve repaired or replaced before there is permanent damage to the heart.

2. Yes, an otherwise healthy and fit person recovers more quickly than a "sedentary" (like I was).

3. Yes, there are risks, and there are no guarantees. But the prognosis for high quality of life after surgery is very very high.

Hope this helps. We all wish you well.

 

[ALCapshaw2]

Welcome to our world Terry.

You can learn a lot about Valve Disease by reading over the archives on Pre-Surgery, Post-Surgery, and Valve Selection. That's a LOT of reading.

I *assume* the numbers you gave are for effective Valve Area. IF that is the case, he needs to see a Heart SURGEON ASAP because if those numbers are the valve area, they indicate the valve is nearly closed and needs to be replaced SOON.

The prognosis for an otherwise healthy patient under 60 years old is VERY GOOD. Recovery does take time, probably several months for the sternum to heal, before your husband can return to construction work.

He needs to limit his physical exertion until this problem is fixed because at those numbers, he is at HIGH RISK.

Please get him to see a SURGEON ASAP.

'AL'

 

[ar bee]

can only endorse..

can only endorse..

what all the others were writing:

dont wait, get to see a doc who understands the stuff and then get the valve repaired/-placed.

As you can read all over here, open heart surgery is not such a big issue anymore these days and most people feel much much better than before.

keep us posted on good progress!

regards
ar bee

 

[Gemma]

Hi Terry,
My boyfriend Jim was diagnosed with congenital (ie he was born with it) aortic valve disease a little over 12 months ago. Like you, I was terrified of what it would mean for us both when I first found out. I was convinced he was going to collapse and that he wouldn't make it to the operation - he didn't have many symptoms, the main one being chest pain, but the cardiologist made it pretty clear how serious the whole thing was. Of course he didn't collapse or die and had his aortic valve replaced in December.
Now, 14 1/2 weeks later, he managed to go clothes shopping with me for 4 hours (and it was me who got tired first) - an achievement for any man, never mind one who had open heart surgery not long ago .
It's very confusing trying to get a handle on what everything means, but also important that you BOTH understand what's going on - that way if your husband forgets something he's been told you can help fill in the blanks (especially important in the days after surgery).
I don't know anything about the American health system I'm afraid so can't help with the insurance issue - we're very fortunate in the UK that the national health service paid for everything. They get some bad press and aren't perfect - admin problems particularly, but I don't know what we would have done otherwise.
You'll find pretty much everything you need to know here, so just put in a search (at the top of the page) - there are some great posts on questions for the cardiologist/surgeon, what to take to hospital, what you might need at home after the operation, that kind of thing. Plus loads of people who help put things in perspective (I've had many kind replies in the past just when I thought I was going to totally lose the plot!).
Hope this helps a bit - send me a PM if you've got anything you want to ask.
Gemma.

 

[Georgia]

How's it going?

How's it going?

Terry, just wondering how things are going - have you found a way to get coverage for your husband's surgery?

I wish I had some good advice for you; my only thought is that if he's unable to work now your family may be eligible for AFDC (if you have children).

Let us know how things are going - I know this is an awful time for you.

 

[bethanne]

Hi Terry,
I am also a young-un at 41. I am in the waiting room for surgery and it can be scary at times. The good news is this is something that can be fixed. And it is hard to believe that it can be considered a routine procedure. The bad news is that it needs to be fixed. Once symptoms begin you should pay attention, your body is telling you something....

This is a great place to be for answers to questions, none are too silly or small and you will find alot of support as well.

Glad you found us. Your husband is fortunate to have you to look out for him and your family. Keep asking questions

 

[Tlock60]

Thanks everybody

Thanks everybody

Hi,
Thanks so much for all the kind words. We are heading to Duke Hospital in North Carolina this thuresday for pre-surgery and then friday is the big day. I am terrified. And I just can't image what he is feeling. I finally had to break down and go to Social services here and get him on medicade. Which trust me it's not that easy. I ran from place to place and filed out paper till it was coming out my ears...lol. But we are finally going to get him better. But I don't mind telling you these lasts few days are really getting to me. I just want to get him through it with no problems.I think that is my worst fear is while he is the operating room and all that could go wrong. He has this thought in his head that when they do open him up that the are going to see that he has cancer. And that's because that is what happend to one of his aunts. I just think it is his nerves. But I try and reasure him that nothing bad will happen and just who much better he is going to feel. But again that so much for all the good advice and I will let you know what's happening when we get back home. I sure not going to leave him...lol.

Talk to everyone later,

Terry

 

[Ross]

You've now entered the hardest part of all-Waiting!
Everything will work out just fine. Turn the reins over to the creator and leave the control go. You can't do anything about it anyway.

Post when you can. We'll be awaiting the results.

 

[Glenda]

Terry, you both will be in my thoughts and prayers. Remember that God is in control and His loving arms will be around you both.

 

[Nancy]

Terry-

Everything will be OK. Now here's some tips for you while you wait for surgery to be over with. It's hard to wait, I know, I've had to wait through many surgeries that Joe has had.

Here are some things that will make you more comfortable.:

A small neck pillow if you want to rest your head. None of the chairs in any of the waiting rooms I've been in had any high back chairs.

Some headache remedies.

Immodium for those kinds of upsets, believe me it happens.

Something to occupy your mind, like crosswords, a good book, needlework, CDs or radio

Chapstick

Mints, hard candies, gum, or mouth spray. Your mouth will get very dry.

If you have a large family that will be waiting to hear, see if you can call one of your friends or family and have them call everyone else. You'll be absolutely exhausted, and one of the last things you'll want to do when you leave the hospital is to call a whole bunch of people. You're going to be totally involved with your husband and visiting him in the hospital.

Bring some loose change for vending machines, in case you need something after the cafeteria closes.

Wishing you all the best.

 

[Kathy]

Terry,

Things certainly moved quickly for you. I am so relieved to hear that your insurance issue is resolved. Duke has a great reputation and your husband will be well cared for. I'm sure that you will be a great help to him.

You will both be in my prayers.

 

[Tlock60]

He made it

He made it

Hi,

Thanks everyone for the kind thoughts. We are 1 week post op and so far so good. But I still worry about every little pain he has...lol. Now his hands are tingling and numb. I have talked to some other people that say it's nothing to worry about. But to be on the safe side I will call his doc anyway.One thing I know is I sure don't want to go through this again. I know he went through the worst part and I sure wouldn't want to do it myself but sitting there through the operation and worring and then sitting at the hospital for a week well let me tell you I was so ready to come home. I'm still trying to get myself back to normal...LOL. I stayed in his room the whole time and well you know howmuch rest you can get in there....NONE. But hopefully the hard part is behind him now and he can get back to normal soon. Agian thanks everyone here for the prayers they worked...

God Bless

 

[Harpoon]

Kinda catching up here...

Glad your husband came through OK. I know how hard all of that can be, especially the last few weeks leading up to surgery for most people, patients and family.


As soon as he's able, he should be doing some form of cardiac rehab. Not every surgeon or cardiologist will suggest this, but from my personal experience and what I've read here, it's the best thing for you.

Short of that, he needs to be up and walking as much as he feels comfortable with. If neccesary, push him to do it. Short walks at first, maybe just around the house or out to the mailbox or to the end of the driveway and back, whatever, but they should be frequent and be longer in duration every time. A LOT of people here as well as many doctors will all say walking is the best thing for you after any heart surgery.

My condition improved in leaps and bounds after I was finally able to get out of bed and move around. I spent a month in an induced coma after surgery and had a real rough time, but once I got out of bed (with all kinds of IV's and monitors and nurses tagging along) I really started perking up.

I know a few people who have had trouble doing that. one thing that comes up a lot is a fear of "stressing" your heart after surgery, that laying around the house all day doing nothing is better for you, gives your heart time to heal. Well that's a bad habit to start. The heart is a muscle and it needs to be worked. It gets stronger only if it's being used. Becoming a couch potato after surgery will make matters worse, not better.

Good luck, keep a close eye on things but it should be OK to relax now, the hard part (surgery) is over with. =)

 

[tobagotwo]

You might look to see if your husband's been put on Atenolol, a beta blocker sometimes used to slow the heart rate a little. I got numbness/tingling in my hands when I started taking it. I called the cardios, and they swore it wasn't related.

I looked it up online. It's called paraesthesia, and is a known side effect for Atenolol, and possibly some other beta blockers. It was annoying and unpleasant, but basically harmless, and it stopped showing up after a few days. Don't look at other causes for paraesthesia (pointlessly distressing trip through hypochondria-land), just see if it's a side-effect of one of his meds. As a side-effect, it's not actually harmful, and not linked to any of the other things you might read about.